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Is your battle my battle?

I agree. Fatigue is a big part of this post. I’m tired. I’m emotional not hormonal. I’m grateful for what I have, but feel short-changed. I feel guilty for feeling that way.

I read about a lady battling to get her husband the support he needs to live with his mental health problems. He’s homeless because he can’t be around his kids, he is being over-looked by an over-whelmed healthcare system. His kids know he’s homeless but don’t understand why he isn’t being helped. He doesn’t tick the right boxes so he isn’t a priority. He is deteriorating on a daily basis, his wife is desperate to help him but is being blocked at every turn. Yet, she keeps fighting. She fights every day.

People like her give me hope for a future that I struggle to see. She’s doing it for her kids. She’s doing it for her husband. The side effect of that, is that she is doing it for me and for you too. What society as a whole, I think, tends to forget, is that we are are ALL a single, unexpected event away from the situation this lady finds herself in. She didn’t marry a man with obvious mental health issues. She didn’t have children with a man with obvious mental health issues. Yet a single circumstance sees her on a 9-year battle to get help for him. I feel humbled by her battle and in awe of her strength.

And yet.

I, like so many of us, can’t comprehend her situation. Can’t see past our own circumstances. Is this wrong? On so many levels it feels like it is. I feel guilty because I can’t give the wider issue that she raises the due attention it deserves because I’m wrapped up in my own. Aren’t we all? On another level, I feel grateful. I feel such a sense of relief that I don’t have to live everyday raising small humans to be decent citizens while trying to explain to them how society, as a whole dare I say, is letting their father down. Is it enough to think “that’s terrible, I wish there was something I could do” and move on to the next story? Well we all know the answer to that. At least I hope we do. Yet, it really isn’t that clear cut and simple, is it.

My issues, my mental health problems seem minor in comparison. I equally hate myself and commend myself for saying this. My situation is different. Completely different. Yet, the facts remain. I have epilepsy, I have MS, I have depression (& before the pedantic police pull me up, yes I know I’m supposed to say “suffer”), I have mental health issues and I struggle to see a way forward. I’m still functioning in society though and for this I feel grateful. Or am supposed to feel grateful.

I just don’t know that a society by which it’s ok to let a man and his family suffer for 9 years because the man doesn’t fit the right boxes to get him adequate help is the society I want to live in. It seems all I can do to try to change that is continue to help the lady raise awareness of her situation and to vote. Oh don’t get me wrong. A huge part, the vast majority indeed, of society are good people. People who are shocked and saddened when they hear of issues like this. That’s a good thing. Yet, I feel that we are gradually moving toward a time where this lady’s circumstances are the norm.

How very sad.

My own issues, when compared to this lady’s pale in comparison. But they are still valid. They are my day-to-day. And I suppose that’s what we all have to remember. It’s all relative. I can’t compare my situation to hers because it’s so very different. I can sympathise, but struggle to empathise. Perhaps because I really, simply just don’t want to imagine what it must be like to walk in her shoes.

I feel tired. I bet she does too. I feel emotional. I bet she does too. I’m battling my own demons, I bet she is too. I am utterly fatigued. I wonder if she is too. Her kids are suffering more than a child should. I don’t have to deal with that. Her husband is suffering more than a husband should. I don’t have to deal with that. She is battling hard to raise awareness. I wonder if I do enough of that. She is battling every day. I wonder if I have the strength to do that. Her pleas for assistance from the relative bodies are, effectively, being ignored. I struggle to raise to the relevant bodies my pleas.

The differences are pronounced, but the similarities can be found.

The moral of the story, in my eyes at least, are epically biblical. “There, but for the grace of “xxx”, go I”.

Another disjointed outpouring from a fatigued and emotional mind.

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What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

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Epilepsy and Advice…

Over the years, I’ve been on the receiving end of more advice than you could shake a stick at! I love that expression “could shake a stick at”. Although the origins of the saying are many, it’s thought that it’s a reference to having more sheep than you could control with a single shepherd’s staff or maybe it’s a reference to George Washington being seen brandishing a ceremonial wooden sword over the defeated British troops. Whatever its origins, the phrase aptly describes the abundance of advice I’ve been given. Advice has ranged from “stop being so pathetic” to “just ignore it” and has included many other pieces of unsolicited wisdom such as “listen to your heart”, “listen to your head” and, my personal favourite, “just be patient”. The giving and receiving of advice is very dangerous territory, to my mind. Get it right and you’re a hero; get it wrong and you’re the devil incarnate. If you give advice, you have to be prepared that it may not be accepted or adhered to. It means you have to be able to have no feelings as to whether the advice is taken or not. And the decision of the receiver to act on or ignore the advice is indeed their right. 

If I ask you for your advice, it means I want to hear your opinion as to what you think I should do in a particular situation. It doesn’t mean that I’m necessarily going to act on it. Similarly, if you don’t really want my opinion then please don’t ask me for it. Don’t ask me what I think, then get mad because I express an opinion that may not be a popular one, or may be controversial. 

When is advice just an opinion and what exactly is the difference? According to the Oxford English Dictionary, advice is “recommendations offered with regard to prudent action” and opinion is “a view or judgement formed about something, not necessarily based on fact or knowledge”.

If I’m understanding that correctly, then advice is what I think someone should or could do in their situation; whereas opinion is what I think of, or what I would do in, that same situation. The two aren’t necessarily the same. 

Living with epilepsy is a tough gig. Sufferers like me have no outward signs, other than showing up with bruises, chipped teeth and blackened eyes every now and then. We know that when Joe Bloggs in the street sees those injuries he doesn’t immediately think “epilepsy”. I’ve been called a “junkie bitch” in the street before. Someone saw needle marks on my arms and made an assumption. His opinion of me was formed right there in a split second. I could have reacted angrily, tried to put him right, but instead my head dropped, my confidence ripped and my world shrank. He had no idea how long I’d spent in hospital and how I’d been restrained and how hard I fought the medics trying to give me an injection. Opinions can be brutal. They can be formed with no basis, no understanding, no thought process and no questioning; yet we are all entitled to them.

Living with some people’s attitude toward epilepsy is also hard. I do believe things are changing and stigma is lessening but it is definitely still out there. What I find hard, is the ignorant opinion that I should not (could not even) live a full life because I suffer from epilepsy. I find unasked for advice to stay home and stay quiet also difficult to deal with. Yet, over the years, I’ve had to accept there is a hardcore of ignorance out there. Fear of the inexplicable and no desire to understand. An immediately formed idea of what the eye can see, but not the truth behind it. 

If I stand before you in my bruised and battered glory after enduring the punishment my brain has inflicted on my body; what do you see? Do you see beyond the bruising? Are you willing to look? Or are you going to assume you know my story and advise me to leave the man who did this to me? Are you going to whisper behind my back? Are you going to discuss with your friends my “situation”? Are you going to bother to find out what that even is? Maybe it is a sad reflection of the world that we live in, that some people immediately think I’m a battered woman or someone with a drug habit when they see my superficial wounds. 

I’m lucky. Most, not all, but most of the people I come into contact with, can look at me and see beyond the deep purple shading, the scars on my face and the puncture wounds on my arms. Most offer no advice or opinion, just the words “I’m here if you need me”. 

I find it next to impossible to ask for help. It’s a weakness on my part. Sometimes, I find myself on the edge of an abyss and know it would be easier to allow the darkness to consume me, than to admit there is a problem. In those situations, I’m scared to speak of them for fear of consequences. I don’t want to be the cause of someone else’s worry, I don’t want to be a burden. I don’t want to hear the strain in their voice or see the pain in their eyes. So, I tough it out. As I’ve got older, I’ve found it harder to come back from the darkness intact. My fuse is shorter and my internal turmoil verges on intolerable. All compounded by the knowledge that the strain can bring on a seizure at any time. But, I don’t want you to know that the fear of that kills me a little every day. I plaster on the smile, but my words can be harsh. You hear the tone but don’t understand it. The tears borne of frustration come next. I can’t express adequately to you how I’m feeling. I can’t make you understand the pain I’m feeling. I don’t know how to ask you for help. 

My head and my heart are often in conflict. My patience sometimes knows no bounds and other times is non-existent. So, if you are offering me advice that includes those aforementioned pearls of wisdom, please ensure you also include the “how” part because, whilst I’m familiar with the theories you’re expounding, I’m darned if I know what to do with them!

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Epilepsy and Stigma…

Stigma. A mark of disgrace. Shame. Why is epilepsy stigmatised so much more than other chronic diseases such as diabetes? 
I had my first seizure in 1986. My diagnosis came 2 years later. I was told at the time that a skiing accident was the most likely cause. I’d never heard of epilepsy. I’d never been exposed to it. I’d heard of diabetes because a girl at school had it, but epilepsy was a new concept for me. It was decades later that I learned that I was actually genetically pre-disposed to the condition and that, although the skiing accident was bad, it was more likely to have been the trigger than the actual cause. I think of it as being like a switch. The accident turned my epilepsy on. I sometimes joke that another significant bang to my head may switch it off! 
Up until 1970 in the UK, having epilepsy meant that I would not have been allowed to marry. In some poor parts of the world, epilepsy is still believed to be a sign of demonic possession or witchcraft. In fact, in some parts of the world “witchcraft” is used by traditional healers to try to free the sufferer from the symptoms. These cures often cause more problems than they solve but the lack of access to proper medical care coupled with an unwillingness to admit to suffering such a stigmatised condition, means traditional healing is the only option available. 
Education is key to understanding epilepsy and eradicating the debilitating stigma associated with the disease. In my experience however, such education is not readily available, the condition is far from well researched and understood and, despite us living in the 21st century, social stigma is still rampant. I still hear stories of kids being told to avoid those with epilepsy in case they catch it! I still hear stories that epilepsy is a sign of being mentally disturbed. I still hear stories that having epilepsy means the end of a normal life. Thankfully, in the UK at least, I no longer have to fear the probability of me being burned at the stake for being a witch, however I do still have to live with the stigma of having epilepsy. How I choose to deal with that, though, is entirely up to me.
Having a diagnosis of epilepsy does not have to signify the end of the world. There are a multitude of different types of epilepsy and this comes with an array of severity and there is not a one-size fits all method of dealing with the disease. Having epilepsy presents an opportunity to make a choice. I can choose to let stigma, fear and ignorance dictate my life’s course; or I can choose to educate myself (and others), push some boundaries and live a full life. Hobson’s choice, in my opinion. I don’t for one second mean to imply that the latter is the easiest course of action, but I do believe it to be the positive way to deal with the disease.
Yes, I have personally experienced a change in attitude toward me when a person discovers I have epilepsy. I don’t hide it, I’m not ashamed of it and the attitude of others helps me decide if I want them in my life. Over the course of my career in epilepsy, my attitude toward myself has changed too. Epilepsy is a factor in my life, but it doesn’t make my decisions for me. I sign waivers to acknowledge my acceptance that certain activities could be considered more dangerous for a person with epilepsy; but as long as I’m not putting others into a dangerous position without their knowledge, then it really is up to me what activities I partake in. 
Epilepsy seems to have struggled to ease its way into mainstream acceptance. Unfortunately, a seizure is not a pretty thing to witness. It’s distressing, involves violent jerking, it sometimes involves leaking bodily fluids and can be accompanied by terrifying screams. It’s not a delicate faint. It’s a very physical reaction to an electrical disturbance in the brain. I personally think this is partly why it isn’t more openly discussed and, for want of a better word, advertised. Only very very recently have I begun to see famous faces talk openly about their experiences with epilepsy. In the main, these are sportsmen. I applaud this openness as it’s a way of demolishing the demons surrounding epilepsy and removing the stigma. I hope that more and more people start speaking up about their experiences and that it provokes discussion and leads to more research and better understanding.
Epilepsy is not the domain of the feeble-minded. It doesn’t restrict itself to a particular set of people. It’s certainly not contagious. Avoiding talking about it, will not make it go away and being embarrassed by it will not cure it. Talking about it, acknowledging it and being educated about it, won’t miraculously solve all problems, but it will help to diminish the stigma surrounding epilepsy.
I’ve dived with sharks. I’ve skydived. I’ve ridden a jet ski. I’ve skied. I’ve travelled the world. Trekked in jungles. Swam in clear, warm tropical seas. I’ve ridden the worlds highest amusement ride, the Big Shot. All this and more while living with a diagnosis of epilepsy. The only restrictions in my life are the ones I place on myself. Having epilepsy means my world is different and I’m more than ok with that.